Bethany* wanted to return to her premastectomy "normal" life. A few months after she finished chemotherapy and radiation, she finally felt ready to exercise again. The physician hesitated when she requested written permission to resume her gym membership, cautioning Bethany to take it slowly.

"And you have to baby that right arm -- indefinitely," the healthcare provider told her.

Of the 2 million breast cancer survivors in the U.S., between 200,000 and 400,000 develop lymphedema, a chronic and progressive swelling of the arm, shoulder, neck, or torso -- sometimes years later. To reduce the risk of lymphedema onset or progression, healthcare providers often direct postop patients to avoid overusing upper-body muscles on the affected side. But research is showing it might be time to challenge this guideline.

Many risk factorsAlthough there is no way to predict who will develop lymphedema, factors associated with risk include radiation treatment, obesity, infection or injury to the affected arm, and axillary lymph node dissection.

"Approximately 35% to 40% of women who undergo axillary node dissection will develop lymphedema at some point in their lives," says Saskia R.J. Thiadens, RN, founder and executive director of the National Lymphedema Network (NLN), an internationally recognized nonprofit organization based in Oakland, Calif.

Even sentinel node biopsy, diagnostic removal of one to three "sentinel" lymph nodes -- the first lymph nodes to which cancer cells are likely to spread -- in the lymphatic chain, is associated with up to 6% risk. And lymphedema can develop at any time from initial treatment to 20 years later, she says.

Bethany witnessed lymphedema through her mother's postmastectomy bout with it. She remembers her mother's frustration with one "larger" arm and the difficulties of finding blouses to fit it. Bethany would help her mother put on a compression sleeve and listen to her complain of tightness, pain, and a heavy feeling that made her not want to lift her right arm.

Years later, Bethany heard about the benefits of exercise for breast cancer survivors with lymphedema and wanted to begin a course of prevention for herself.

Rowing for answersA 2006 study conducted at the University of Minnesota and the University of Pennsylvania examined the relationship between upper-body exercise and lymphedema. In the largest and longest randomized control trial, researchers found no association between lymphedema and progressive weight training twice a week among breast cancer survivors -- some who had lymphedema previously and others who did not.

This is not the first study on breast cancer survivors and exercise. In 1995, researcher Don McKenzie, MD, PhD, a sports medicine physician at the University of British Columbia in Canada, confronted the breast cancer survivors' exercise taboo. McKenzie began a clinical trial to test whether upper-body exercise had a role in recovery from breast cancer and lymphedema.

Through his study, McKenzie contends that upper-body exercise can improve range of motion and reverse muscle atrophy; activate skeletal muscle, which might help pump lymph; stimulate the immune system; and reset the sympathetic tone of the lymphatic vessels.

McKenzie chose dragon boat racing -- a strenuous, repetitive upper-body activity -- and formed "Abreast in a Boat," a dragon boat team of breast cancer survivors in Vancouver, British Columbia. The women who participated in this hallmark study reported no new cases of lymphedema and no increase in symptoms for those with pre-existing lymphedema. Since then, dragon boat racing has caught on in the U.S., and many teams include groups of female breast cancer survivors.

Ten years postmastectomy and reconstruction, Phyllis Strock, RN, has been able to keep lymphedema under control, initially with physical therapy. Strock wears a compression sleeve on her right arm as a precaution when she paddles with the Philadelphia Flying Phoenix Dragon Boat Team.

"Lymphedema and its prevention are enigmas," says Strock, who works as a psychotherapist in the Philadelphia neighborhood of Chestnut Hill. Still, she says physical activity "helps the body and the mind." Not to exercise would be "destructive."

Kathy Cunningham, RNC, a nurse clinician in the neonatal intensive care unit at Northside Hospital in Atlanta, Ga., hates exercise --except for dragon boat racing. Cunningham looks forward to the sense of peace and the feeling of being alive that she gets during her weekly practice on the water.

In 2003, Cunningham had a mastectomy followed by reconstructive surgery. She is still lymphedema-free. She's been paddling since 2005, and in September she will represent Dragon Boat Atlanta at the second international breast cancer survivor regatta in Australia.

For the futureWith an increasing number of people surviving cancer, oncology's focus has become survivorship and quality of life -- living the best life after a cancer diagnosis, says Pamela Vlahakis, RN, CEN, CRN, nurse coordinator of Hunterdon Regional Breast Care Program, Flemington, N.J. Exercise offers survivors the ability to take control of their lives, she says. Vlahakis advises breast cancer survivors to individualize exercise, taking into account personal medical history. A moderate approach that includes proper exercise conditioning is healthful.

Women also need to be educated about lymphedema so they can watch for symptoms and seek prompt medical care, Vlahakis says. She endorses the National Lymphedema Network's guidelines and position papers on risk reduction practices as a good resource.

Lymphedema remains a serious problem for breast cancer survivors, one with no known cure or prevention protocol. Early intervention and treatment are important. In the meantime, researchers are calling for more studies. "Additional work is needed to determine whether or not exercise leads to physiological change of lymphatic structure and/or function as well as timing between exposure to a risk factor and incidence of lymphedema," say researchers for the 2006 study conducted by the University of Minnesota and the University of Pennsylvania.

As for now, this evidence heralds a need to reevaluate guidelines that seek to reduce lymphedema risk through avoiding exercise.